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Minutes of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process Conference Call to Discuss Scientific Workshop Panelist Nominees on August 5, 2009

Call Participants: Thomas R. Insel, M.D., IACC Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Ellen W. Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Lee Grossman, Autism Society; Cathy Rice, Ph.D., Centers for Disease Control and Prevention (CDC); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Alison Tepper-Singer, M.B.A.; Stephen M. Shore, Ed.D., Autism Spectrum Consulting; and Ed Trevathan, M.D., M.P.H., Centers for Disease Control and Prevention (CDC)

Introduction and Discussion of Scientific Workshops

On August 5, 2009, the Subcommittee for Planning the Annual Strategic Plan Updating Process held a phone conference to discuss panelist and liaison selections for the Scientific Workshops. The workshops, to be held September 30 and October 1, 2009, will inform updates to the Strategic Plan for ASD Research. Taking current ASD research into consideration, panels will identify gaps, opportunities, and priorities in the existing strategic plan. Each panel will address one question from the plan, (Questions 5 and 6 will be combined into one panel), and will include two clinicians, researchers, and personal/family members. Two members of the IACC will act as liaisons for each panel, preparing the participants and integrating the panel’s recommendations.

During the call, the subcommittee members discussed the merits of the panelist nominees, in preparation for an e-mail vote on the panelists and liaisons. Dr. Insel described the purpose of the Scientific Workshops and the selection process for the panels. After the call, the subcommittee members would receive an e-mail ballot and asked to select three choices for each panel and liaison selection. This will determine the two panelists and one alternate for each panel, as well as the two liaison selections. Ms. Lyn Redwood asked how overlap would be dealt with if the same panelists or liaisons were selected for more than one category. Dr. Insel said that all panelists and liaisons should serve only one panel and that a follow-up vote would be needed to resolve any overlap. He asked that one Federal member and one public member make up the liaison team for each panel and said that new panelists and liaisons could be nominated during the call. Subcommittee members received a list of persons nominated by the IACC prior to the call. Dr. Insel said that the Office of Autism Research Coordination (OARC) will help to convene the preparatory calls with the panel prior to the workshops.

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Panel 1: When should I be concerned?

Clinician Panelists

Dr. Insel asked the members to use the call to familiarize their fellow members with the nominees and their qualifications. Dr. Insel recommended Dr. Rebecca Landa and Dr. Geraldine Dawson as clinicians for Panel 1: When should I be concerned? He said both clinicians had experience with the early stages of autism. Dr. Landa focuses on detecting autism before twelve months of age. Dr. Ed Trevathan spoke about Robin Hansen who had investigated developmental screening tools in other countries. Mr. Lee Grossman recommended Dr. Hansen as well, in addition to Dr. Derrick McFabe, who he said conducted cutting-edge prenatal and postnatal research. He also recommended Dr. Catherine McClain. Stephen Shore spoke to Dr. James Ball’s extensive experience in education.

Family/Personal Panelists

The panel then discussed the personal stakeholder panelists for Question 1. Mr. Grossman recommended Ms. Paula Durbin-Westby, Ms. Jane Johnson, and Ms. Marguerite Colston, who are active in the Maryland area. Ms. Redwood recommended Mr. Peter Bell, describing him as involved, well-versed, and representative of a broad portion of the autism community. Another panelist recommended Ms. Marguerite Colston. Ms. Singer recommended Ms. Durbin-Westby and Ms. Nancy Wiseman.

Research Panelists

Dr. Insel noted that Dr. Cathy Lord had chaired the scientific workgroups held in January 2008 and that her work includes developing new tools for screening and detection. Ms. Redwood recommended Dr. Deborah Fein and Dr. Trevathan recommended Dr. John Constantino, saying that he could serve as either a researcher or a clinician. He also recommended Dr. Robin Hansen, Dr. Rebecca Landa, and Dr. Lord. Dr. Insel noted that Dr. Fein had given a well-attended talk on recovery at IMFAR.

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Panel 2: How can I understand what is happening?

Clinician Panelists

Mr. Grossman recommended Dr. James (Jim) Ball and Ms. Singer recommended Dr. Craig Newschaffer, citing his early risk factor studies. Ms. Redwood recommended Dr. Bryan Jepson, who had been part of the 2008 planning workshops. Dr. Insel said that Dr. Sarah Spence is a pediatric neurologist who is a key player in large-scale intramural efforts. Dr. Trevathan recommended Dr. Pauline Filipek, also a pediatric neurologist, who developed practice guidelines for initial ASD assessments and treatments. Dr. Filipek has also investigated mitochondrial involvement in ASD, an emerging field of scientific interest.

Family/Personal Panelists

Ms. Singer spoke about Dr. Ashura Buckley, a neurologist who has a 30-year-old brother with autism. Dr. Buckley is finishing an NIH fellowship and her studies have focused on REM sleep patterns in people with autism. Dr. Stephen Shore recommended Mr. Nick Dubin, an adult on the spectrum who has written books on autism and anxiety. Mr. Grossman recommended Mr. David Humphrey, who co-founded the Autism Treatment Network, and Ms. Valerie Paradiz, an adult on the spectrum. Ms. Redwood spoke about Mr. Mark Blaxill, to represent a parent perspective and said that she was concerned with researchers filling the role of family/personal panelists. Mr. Trevathan recommended Ms. Stacie Ramirez, an Atlanta mother of a child with ASD who is active locally and works for the University Centers on Disability. Dr. Insel provided details about Mr. Don Rosenstein, an NIH clinical director with a 14-year-old autistic son. Dr. Insel described him as an extraordinary clinician who had become involved with autism more recently.

Research Panelists

Mr. Grossman recommended Dr. Martha Herbert and Dr. Craig Newschaffer for the research panel. Dr. Trevathan endorsed Dr. Chris Ross, a neurologist and experienced clinician at the cutting edge of genetic research on ASD. Dr. Trevathan said that Dr. Ross had experience convening large collaborative groups.

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Panel 3: What caused this to happen and can this be prevented?

Clinician Panelists

Mr. Grossman advocated for Dr. Robert Hendren, the executive director of the MIND Institute and father of a child with ASD. Ms. Singer recommended Dr. Lonnie Zweigenbaum, who is involved in studies of baby siblings of children with ASD, and Dr. Daniel Rossignol, a clinician with a large practice and a parent of a child with ASD.

Family/Personal Panelists

Dr. Stephen Shore endorsed Ms. Temple Grandin and Dr. Lars Perner, both self-advocates, and Mr. Jeff Sell, father of autistic twins. Ms. Redwood recommended Ms. Sallie Bernard, executive director of SafeMinds. The subcommittee also recommended Ms. Denise Resnick, founder of the Southwest Autism Research and Resource Center). She had been involved with the earlier iteration of the IACC and works as an advocate for families and individuals on the spectrum.

Research Panelists

Dr. Shore recommended Dr. Herbert and Dr. Stephen Edelstein. Ms. Redwood endorsed Dr. Irva Hertz-Picciotto and Dr. Isaac Pessah. Dr. Insel noted that Dr. Pessah was always a few years ahead of his research colleagues. He said that Dr. Matthew State is an MD/PhD working to identify cellular targets for autism. Mr. Grossman stated that Dr. Herbert and Dr. Pessah would be his top selections.

Liaisons

Dr. Trevathan nominated Dr. Story Landis to serve as a Federal liaison for the panel, saying that he hoped one of the liaisons for the risk factors panel would be from NIH. Ms. Redwood recommended Dr. Susan Swedo but the subcommittee agreed that liaisons should currently serve as IACC members. The group agreed to add Dr. Duane Alexander, director of NICHD, as a potential liaison.

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Panel 4: Which treatments and interventions will help?

Clinician Panelists

The subcommittee agreed to add Dr. Swedo as a clinician nominee and decided that Dr. Hendren would be better suited to Question 4 than Question 3. Ms. Blackwell asked whether any of the clinicians included on the ballot worked with adults with ASD and was told that Dr. Eric London worked primarily with adult patients. Dr. Trevathan recommended moving Dr. George Jesien from a researcher nominee on panel 5 to a clinician nominee on Panel 4. He also recommended adding Dr. Opal Ousley to the ballot. Ms. Redwood said that she felt it would be important to have both MDs and PhDs on the clinician panel to provide difference perspective. She asked that Dr. Eric Samstad be moved to Panel 4 because he works at a clinic serving people with autism. She stated that she was concerned with exclusively including neurologists on the panel because other medical co-morbidities may be missed. Dr. Insel noted that Dr. Swedo and Dr. Hansen are pediatricians.

Family/Personal Panelists

Mr. Grossman recommended Ms. Sharisa Kochmeister, who is non-verbal and uses an augmentative communication device. He also endorsed Ms. Hannah Cary, and Mr. Jim Adams. Ms. Redwood said that Ms. Katie Wright was well respected in the autism community, as is Ms. Portia Iversen, founder of Cure Autism Now and author of Strange Son.

Research Panelists

Ms. Blackwell recommended Dr. David Mandell, who works with Centers for Medicare & Medicaid Services investigating the efficacy of various treatments and interventions. Mr. Grossman recommended Dr. David Mank who conducts research on adult services. Ms. Redwood endorsed Dr. Jill James who has done work on oxidative stress and Dr. Shore endorsed Dr. Brenda Myles. Ms. Blackwell noted that Dr. Myles would probably not be available for the scientific workshops. Dr. Insel told the group that Dr. Jackie Crawley conducts research using animal models of ASD. Dr. Ed Cook, Dr. Sally Rogers, and Dr. Fred Volkmer head Autism Centers for Excellence (ACE) centers.

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Panel 5: Where can I turn for services?

Clinician Panelists

Mr. Grossman recommended Dr. Cathy Pratt. Ms. Blackwell said that it would be important for clinicians on the services panel to think beyond treating patients and address whole systems of care. The subcommittee recommended Mr. Tec Chapman and added Dr. Michael Chapman. Ms. Wall-Cote was praised for her systems perspective on universally available services.

Family/Personal Panelists

Mr. Grossman recommended Ms. Lisa Endow, Ms. Valerie Paradiz, Mr. Herm Fishbein, and Ms. Ruth Sullivan. Dr. Insel said that Dr. Morton Gernsbacher researches transition to independence issues. She is the mother of a child with autism and president of the Association for Psychological Science. Dr. Majorie Soloman is the mother of a child with autism and a Harvard-trained researcher. She advocates for changes to health policy and insurance coverage. Ms. Redwood endorsed Ms. Laura Bono and Dr. Insel told the committee that Dr. Lu Zeph was interested in adult issues. Ms. Blackwell said the same was true for Ms. Nina Wall-Cote.

Research Panelists

Ms. Blackwell recommended Drs. Charlie Lakin and Brenda Myles. Dr. Trevathan said that Dr. George Jesien would be appropriate as a research panelist because he understands service issues. Dr. Insel said that Dr. David Mandell was a top service researcher at NIMH. His work focuses on systems of care and service delivery and access.

Liaisons

The subcommittee added Mr. Henry Claypool’s name to the list of potential liaisons and removed Dr. Trevathan’s name because he expressed an interest in serving as liaison for other panels.

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Closing Comments

Dr. Della Hann described the next steps. OARC would prepare an e-mail ballot for the subcommittee to vote on panelists. Subcommittee members were asked to vote for three panelists in each category for each panel, in addition to three panel liaisons for each question. This would determine the two nominees and potential alternates. Dr. Hann said that she would return to the panel to make decisions concerning ties and individuals nominated for more than one panel or category. She asked that the members submit their votes by close of business Friday, August 7th, in order to finalize the roster and send out invitations.

Finally, she asked the subcommittee for input on the agenda for the Scientific Workshops. The members had received two potential time lines for the meeting, one allotting 30-minute periods for the workshop panelist discussion and public discussion. The other agenda allotted 45 minutes for each. The subcommittee agreed to use the format that allowed for more discussion time and the phone conference was then finished.

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Certification

These minutes of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process were approved by the Subcommittee on October 15, 2009.  

I hereby certify that this meeting summary is accurate and complete.

Thomas Insel /s/
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee

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